Stop the Clot: The National Blood Clot Alliance

January 30, 2014

The National Blood Clot Alliance (NBCA) is working to advance the prevention, early diagnosis and successful treatment of life-threatening blood clots, such as deep vein thrombosis, pulmonary embolism and clot-provoked stroke. The alliance’s constituency includes everyone who might be susceptible to blood clots, which includes people with clotting disorders, atrial fibrillation, cancer, traumatic injury, and those at risk due to surgery, lengthy immobility, child birth and birth control.

The alliance works through programs that build public awareness, educate patients and healthcare professionals, and promote supportive public- and private-sector policy. You can read more at www.stoptheclot.org. The website describes the organization, provides a thorough overview of blood clots, enables patients to share their personal stories (and read those of others), and much more.

About the NBCA

The NBCA is a patient-led, voluntary health advocacy organization, and its volunteers include many of the nation’s foremost experts on blood clots and blood clotting disorders. NBCA works closely with the Centers for Disease Control (CDC), thrombophilia centers, anticoagulation clinics, hemophilia treatment centers and the National Hemophilia Foundation on its Stop-the-Clot™ Education Project, whose components include:

Stop-the-Clot Forum

Stop-the-Clot Support Groups

The Clotting Information and Resource Center

Educational Brochures

Train-the-Trainer and regional workshops for healthcare professionals

Its programs provide patient education and professional training on the signs, symptoms and prevention of blood clots and clotting disorders.

The alliance’s efforts reflect the unique perspectives of healthcare providers, individuals afflicted with clotting disorders and community leaders. The organization’s Medical and Scientific Advisory Board (MASAB) includes nationally recognized experts on thrombosis and thrombophilia. Click here to read MASAB bios. Barbara L. Kornblau, Director of Health Learning and Patient Engagement, manages the editing of educational site content under the guidance of the MASAB.

Lori Preston’s story

One patient story is that of Lori Preston, Board Member and co-founder of National Blood Clot Alliance. At eight weeks pregnant, Preston underwent DNA testing to find out whether her family history — younger brother with a blood clot in his arm, a mother who had a pulmonary embolism, and other relatives with blood clots in their legs — reflected a genetic predisposition to clotting. She learned that she was homozygous (meaning she had inherited a defective gene from both parents) for a blood clotting condition called factor V Leiden. At a meeting with a hematologist and perinatalogist, she learned that her condition increased the risk of a blood clot by 80 to 100 times. Her treatment consisted of daily injections of low-molecular-weight heparin during pregnancy and post-delivery.

Preston was scared at first, worried that the heparin would harm her and the baby. She says there seemed to be a general lack of information about this disorder, and she felt isolated. Making matters worse, her mother developed pulmonary embolism during Lori’s pregnancy. Fortunately, her mother recovered and is now managed with Coumadin® therapy. And Lori’s pregnancy went well and resulted in a healthy daughter, now 6½ years old.

Since discovering her disorder, Preston has been enjoying life and trying to make smart choices every day to decrease the risk of clotting. For example, she stays hydrated, exercises, does not take birth control pills, and doesn’t smoke. She says that her experience has enabled her to educate her extended family about their risks. Her mother, father, brother, daughter, aunt, and cousins tested positive for factor V Leiden. Thanks to her experience, Preston feels empowered to educate people, particularly women, about thrombosis and thrombophilia.

Preston’s cousin took heparin during her pregnancies and now has two healthy little boys. Preston is pregnant and taking low-molecular-weight heparin again. She says she is very grateful her genetic disorder was identified. The death of her grandmother from a stroke, most likely the result of a clot, and the future of her family spur her on to increase awareness, research, and treatment of blood clots and blood clotting disorders.

Preston says, “Knowledge is power. It can save lives. If nothing else, I want my children to accept having a blood clotting disorder, not to fear it.”

Visitors to the website grew from 650,000 in 2012 to 1.1 million in 2013, and website hits ballooned from 10 million to more than 40 million over the same period. Isaacs said, “These are great signs that our messages are being heard by more and more people across the country and that more people are looking to us as a respected resource. I take this opportunity to acknowledge the great partnership we’ve had with the Centers for Disease Control and Prevention (CDC) in making such awareness possible.”

Several million Americans are being treated for blood clots or blood clot threats, but research suggests that as many as 50% of these individuals will stop taking their blood thinners after a year despite the lethal risks from such treatment non-adherence. The alliance plans to continue working on the adherence challenge in 2014. As a part of that initiative, NBCA will also actively promote education and tools to help patients to be better equipped, enabled, empowered and engaged to assume greater responsibility for their own health and become a more equal partner in their health care. Research shows that such patients are more accountable for their health, have better health outcomes and generally feel better about themselves and their overall health care experience.

Said Isaacs, “Since becoming the NBCA’s CEO in mid-September of last year, after serving on its Board of Directors for more than four years, I believe we have entered the New Year with tremendous momentum. It is an energy built on the growing recognition we’ve earned for our continuing progress, our leadership and our enormous potential. As a long-time consumer advocate, I am particularly enthusiastic about our Board’s decision to move NBCA’s headquarters to the Washington, DC, area.”

The organization plans to work with its partners to convince the government that spending more to address blood clots is money well spent. Blood clots are a leading cause of death in hospitals and the number one reason for costly hospital readmissions. They now cause more deaths than breast cancer, AIDS and vehicular accidents combined.

Quick Links

This website was initially supported in part by a cooperative agreement from the Disability and Health Team of the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention.